Reply To: Tysabri

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6 months ago

Good luck on your treatment and halting progression. I was diagnosed 15 years ago and went through Copaxone and Rebif. I started Ocrevus in September by taking the first two half doses. My physical condition is pretty stable and I can walk with a cane on about all surfaces and without it if on a level and agreeable surface…some seem sticky and reach up and grab my foot ;-0 so it is best if I have a stick if I catch my toe. I am more mobile early in the day and my stamina isn’t great. Within an hour I am like a wind-up toy and need to give myself a break. I have about one hour a day I can do something physically exerting.

I haven’t found that Ocrevus is a wonder drug for me in that I can now run where before could only walk, etc. but didn’t really expect that type of impact. As I explained in my PT session yesterday morning I am happy to hold my ground or make modest gains. He is charged through PT standards with “making me better” and I told him that was likely an unreasonable expectation when working with a progressive disease ;-0 I just don’t want to give any ground from where I am now and push the boundary to the extent I can. Reasonable expectations required 😉

On the other hand I haven’t had a return of symptoms experienced in the past as some people have reported. They have been flooded with past symptoms briefly and than had a rebound out of them to being better than before infusion. I have found that I was initially maybe a bit more wobbly and now feel more stable. Nothing very noticeable or remarkable.

Good luck – if you are approved and feel you are in a good place to give it a try good luck! I did take my flu shot at least 2 weeks before and that type of thing as reduced immunity is a risk but I am the type that never gets the typical bugs that go around. I just get the rare nasty stuff like MS!